I am 6 weeks post op and here is my story.
I’ve had severe pains (the severe ones were always on my right side) and had many, many visits to the ER over the last 15 years for what looked like appendicitis. I’ve had way too many Cat scans. I was diagnosed with fibromagylia when my doctor could find no cause for my pain. I’ve had 2 colonoscopies, an endoscopy and many other tests and procedures. I had my gallbladder removed. I was diagnosed with IBS when a gastro specialist couldn’t find anything “wrong” with me. I’ve had many bouts with kidney stones, kidney infections, and UTI’s which led me to a urologist. My symptoms (pain) have gotten significantly worse over the years. The urologist determined I was retaining urine and I was put through 2 pretty invasion series of tests. The last test she needed to dilate my urethra and that sent my body into intense level 8/9 pain for about a week and a half. The urologist couldn’t explain the pain and the ER said there was nothing they could do and told me they don’t treat chronic pain and sent me on my way. The ER Doctor told me to go to a pain clinic which was not the first time I had been told that. I was in so much pain and so mad when I left. I always have pain Meds at home. I needed answers.
My PCP was great and had been telling me she thought I had endometriosis for about a year. I had expressed many concerns with my OBGYN like my heavy bleeding. (Many times having to replace sheets on my bed). I had many cysts on my ovaries that ruptured. I was taking iron supplements because I was so anemic. After my OBGYN couldn’t take me, my PCP got me in with a phenomenal OBGYN who specializes in endometriosis within a day. He treated me for my severe pain and got me in within a week (for my hysterectomy) seeing me every day to check to see if I should be hospitalized. We decided on a robotic hysterectomy in which he was going to try to save as much of my ovaries as possible. He had given me two choices. They thought the endometriosis was on my appendix and ovaries potentially. I had a choice to do a laparoscopic removal of the potential endometriosis but if it was really bad I would have either needed two surgeries or had to have the full abdomen incision. I was petrified and didn’t know if this was the solution, but my husband and I agreed we would try anything.
I went to the doctor for my 2 week post op and my new OBGYN told me I have Adenomyosis and that’s what has been causing my pain for at least 15 years. I was so thankful and very emotional that I finally have an answer. I had my uterus, cervix and Fallopian tubes out. He saved my ovaries. No endometriosis. Thank goodness!
I had seen every kind of doctor except the OBGYN (because they told me it was not OBGYN related) despite my heavy bleeding, clots, pain and cysts (diagnosed sometimes at the ER). My pain was constant. It would be there and then get WORSE AND “flare up” I didn’t think it was related to a gynecological issue because I had no problem getting pregnant for my two children. I had my daughter almost 11 years ago. She was premature but healthy (I was 29). I had my almost 3 year old son at age 37. I fell down the stairs with him and was put on bed rest at around 30 weeks. I came off bed rest for 1 day and my very low blood pressure spiked to dangerous levels. I went back on bed rest. My son was born 2 weeks early. I am so thankful I was on bed rest with him. I now know my uterus hated me and I’m so luck to have gotten pregnant and carried 2 healthy children. Pregnancy was terrible for me. I was very, very sick the whole time with both pregnancies. My pain was so much worse after I had my son.
I still have many diagnosis’ fibromagylia, severe allergies (food and environmental), anemia probably due to the heavy bleeding, restless legs, anxiety, insomnia, migraines, IBS, kidney stones and bladder issues that I need to sort through. Are they real or will some of it go away. Do I need all the medicine I’m taking??? I finally feel vindicated that SOMEONE finally believed in me and found an answer.